Where Do You Go When There’s No Where To Go?

As a parent of a child with severe OCD, I can attest to the difficulties life presents. It’s a never ending cycle just trying to keep any semblance of normalcy within the family. Now, compound this dilemma with a child who’s many past therapist have essentially given up on any chance for her recovery leaves a parent feeling hopeless and desperate. The endless quest for someone to help her recover,even in the smallest of ways, has become a heart breaking endeavor. I’ve contacted the foremost experts in the field, all over the country, and received several referrals to local therapists and treatment programs. One after the next states, “we don’t accept insurance.” I contacted, again, the leading expert at Duke and he stated, “Am sorry to have to be the bearer of hard news—I wouldn’t organize services for kids that way if it was up to me—but just about everyone in the specialty clinical framework is out of network and no one accepts Medicaid.” How can it be true that the most ill children who are suffering so terrible are not accepted for treatment unless you can pay for it out-of-pocket? Everything you read says how critical early intervention is for children with OCD yet they are systematically eliminated from quality care even though they are covered under major insurance policies.

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About LISA DOUGLAS

Foremost, I am an OCD awareness, treatment and long-term recovery: advocate, spokesperson, consultant, supporter, and educator. I am the mother and sole provider of care for an amazingly smart, witty, charismatic, 13 year old daughter, Alexandra, who was severely debilitated by OCD. The apex of Alexandra’s journey to simply be like ‘normal’ people is marked by her recent, astonishing ascent from the subterranean bowels of OCD Hell she has inhabited for as long as she can remember, to becoming freed to, once again, walk alongside and among the “land of the living.” Over these past nine years and all the realizations I’ve made regarding the mental health system, its profession and providers, society’s stigmas, discrimination, accusations, insurance debacles and all else involved, I’ve been making belief, someone, someday will help my progressively declining child who’s Y-BOCS consistently remained between 34 and 40 for the past 6 whole years! Until this past April, she and I have been on an endless quest for proper treatment which would help to alleviate and, ultimately, release her from the incomprehensibly horrific, all-consuming, self-harming, isolated purgatory from which she was ever-increasingly, perpetually trapped by her obsessions and rituals. Earlier this year, our seemingly last hope for help was to be an extended stay at Rogers Memorial but after months of fighting with her 2 insurance companies over denying coverage for admittance, I was at my wits end, again! Having immersed myself into the global OCD community for many years seeking help, advice, guidance, etc., I came across a post seeking beta study participants using an app for ERP. Immediately, I applied for my daughter. The director/doctor was very hesitant as Alex’s OCD was so extreme. However, with a lot of persuasion, a remarkably wise and kind doctor, as well as, an enormous ‘leap of faith,’ we began using the app from LiveOCDFree. She has been diligently working with the Live OCD Free app for the past 3 months. During this short time, with much hard work and determination, she has achieved remarkable progress against her, previously omnipresent, OCD symptoms! Her OCD had forced her into seclusion, isolation, and painful 4+ hour ritualistic decontamination showers and had even left her unable to touch or breathe the air of those she loves. Remarkably, Alexandra can now walk anywhere and touch almost everything freely. She can hug and spend time with loved-ones and friends without decontaminating. Ali’s showers are now only 25-minutes and do not involve any painful rituals. She continues to work to conquer her remaining OCD issues and anticipates, in time, a full recovery from the OCD which has plagued her since the age of four. Alexandra, and I, want nothing more than to lead a revolution against this insidious, debilitating monster we call OCD! To help others see how much hope there is with proper treatment, she and I are documenting her OCD recovery process and history through Facebook.com/ LiveOCDFree, Twitter: LiveOCDFree, YouTube.com/LiveOCDFree, OCDKids.wordpress.com and LiveOCDFree.com. Please, join and /or follow her journey so you can be aware of OCD, too. View all posts by LISA DOUGLAS

One response to “Where Do You Go When There’s No Where To Go?

  • ocdtalk

    I wish I had some answers for you……I have heard this scenario before and it is heartbreaking. When my son needed residential treatment he was over eighteen and much of it was covered, so we did not have this issue…..what we need to do is lobby to change laws, but that obviously does not help you now.

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